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Gastrointestinal and Urological Issues in HD

Katie: This next question is for Miss Tempkin. My loved one must go to the bathroom a lot but does not really go and he think he has to. He doesn't have a bladder infection, does HD affect the bowels and bladder? And do you find that they think they have to go more often than they really do?

Terri Tempkin: HD can affect, people's bowels and bladders. A neurogenic bowel and neurogenic bladder happens in some people.

Katie said something really important before I jump into that answer. I find so many times, even still, that families try to solve these problems by themselves. That's what the care teams are for, you guys. That's why, even if your loved one won't go into a clinic visit or whatever, reach out to the Huntington's treatment community no matter where they are, because it's, it's our jobs to help you figure this out. Sometimes it's hard for us to figure out. Families, I think, struggle way too much of trying to solve it themselves.

That being said, that's actually a perfect example of this situation. There can be a real thing of neurogenic bowel and bladder. There can be a functional problem with elimination. If that is really what's going on it needs to be evaluated and worked up medically. Also, you guys know, in Huntington's, some people have a little perceverative problem. Sometimes a lot [laughs] of people get into a loop. And they have trouble getting out of that loop.

Part of it is this functional thing that may or may not be going on. But there's also the message. When we have to eliminate, we get a feedback message about, "Oop, bladder's full. Gotta go empty my bladder." That messaging system can be [laughs] broken. Can be not working well. So that person thinks they're getting a message of having to eliminate, when, in fact, they're really not getting that message. You may have that operating. Again, it might just be a perseverative thing, that that person obsesses about.

I think you have to put that on a severity scale, a continuum scale. Is it something that's just kinda really annoying you? Or is it causing something that could potentially be injurious to that person like sitting on the toilet for hours at a time? And if that's the case, you really need to seek help from your provider to evaluate. We talking functional? We talking mechanical? We talking maybe, you know, this perseverative thing. Would medication help to mediate that if it's of the severity that could potentially cause injury to that person?

If we're on the continuum of it being annoying but not hurting anybody, then you have to choose your battles, right? Lisa or Sam, you guys have additional suggestions?

Dr. Sam Frank: This is not, uncommon in Huntington's Disease. I had one patient who thought he had to have a bowel movement so often he would just constantly clog toilets. I have another patient who feels that she needs to urinate so often that she and her husband can't get out and can't do anything, because she's always looking for the bathroom every half hour even though she doesn't have to actually empty her bladder.

Many times, patients like this run into medication. They see a GI specialist, they see a urologist, and they're put on a million different medications for that, nothing works. I think you're right, Terri, that it's mostly, a perseverative issue, in some patients I even think it's a somatic delusion so it's, it's a belief that is not true about their own body that they just can't let go of. Addressing the perseverative or the delusion side of things sometimes, can be helpful. Sometimes negotiating the behavioral aspect can be helpful. So, "No, we're not gonna go use the bathroom every 15 minutes. We're gonna go every half hour. If you have an accident, we'll clean it up." And it turns out they don't have an accident. "Okay, you did great ever half hour, so let's try it every 45 minutes." And the same thing happens. Sometimes you can't reason with someone who's irrational, but sometimes you can push that time a little bit to build in a little bit of, quality of life for both people.

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